MY HEART UPON MY SLEEVE

"It is as sure as you are Roderigo,
Were I the Moor, I would not be Iago:
In following him, I follow but myself;
Heaven is my judge, not I for love and duty,
But seeming so, for my peculiar end:
For when my outward action doth demonstrate
The native act and figure of my heart
In compliment extern, 'tis not long after
But I will wear my heart upon my sleeve
For daws to peck at: I am not what I am."

From William Shakespeare's Othello (Iago's lines)

 Painting by Elin Setara

By being honest and truthful about my situation I lay myself open to extreme vulnerability, but also to incredible love and compassion. I wear my heart upon my sleeve and invite people into the raw emotions that define me now. I might even say that I force them to make a decision as to whether they would like to be a part of this emotional journey - or not. Those who decide they want to be a part will probably find that they reflect a bit upon vulnerability themselves. At least this is what I am told by all my wonderful and caring friends out there.

The price we pay for love is vulnerability and ultimately grief. The day we decide to love someone we invite vulnerability in. And the day we decide to have children we ask vulnerability to be THE huge factor in our lives. No more peace and quiet, no more floating along in a carefree world. Welcome in, worry! Welcome, sleepless nights! Sit yourselves down on my shoulders and pull at my hair and give me headaches!

I spend nights at the Hospice now. Not every night, that's a bit too unpractical, but now that Norwegian Easter is on the threshold - with an enormous amount of public holidays compared to the rest of the world - I will be there continuously. I love being there - having him close.

During a very enjoyable jazz concert (Django Reinhardt style) at the Hospice this week, holding hands, my husband suddenly whispered in my ear: "What would you like, sweetheart? Shall I get you a glass of wine?" Oh, the bittersweet nostalgia of this question, the heartbreaking memories! Wheelchair bound and blind, he suddenly imagined us together in our living room, listening to music. As we have done so very often. And he thought of me and my needs.

Sushi & maki for me while watching over my husband

Colourful paintings by Bengal artist Elin Setara adorn the walls of the Hospice

My spare room at the Hospice

And our toothbrushes are together again... 

Jazz concert at the Hospice! 

Snow fell on Oslo again on Thursday, and everything was chaos. You should have thought we were used to it in this northernmost outpost, but well… when we've got accustomed to spring having arrived we're completely overthrown by a snowfall. Let's put it this way - Norway is the only country in the world where spring precedes winter and winter precedes summer… or something like that. No, I take it back! I spent a week in New York City some years ago and during that week there was summer, winter, spring, autumn - in that order.

Thursday also happened to be my youngest granddaughter Mira's 10th birthday and we went to a steak house to celebrate. This was Mira's own choice, and I thought the time was not yet ripe to discuss sustainable food with her. Mira and I unfortunately both love meat, and my perfectly cooked rack of lamb that I made us last weekend certainly had me hesitating yet again about becoming a total vegetarian.

AND we both love those unhealthy English breakfasts, complete with an authentic English sausage! 

My beautiful granddaughter is 10! (She's on the left - the other one - daughter - is checking her phone for later appointments…) 

Getting a delayed bus back - due to the snow chaos. Mira always delights in seeing me on public transport - "You're sort of always in a car, Mimmi…" (Another environmental challenge for me, I see that). 

Painting by Elin Setara

Love, vulnerability and sorrow have been important themes for me and my best friend Grete during our conversations this week. The initial words of this blog post were bits of the heartbreaking but oh so healing dialogue we've had.

I am paying the price now for having loved with open arms and wearing my heart upon my sleeve, and not least having been loved back - unconditionally. But this is what I think: Would I rather have been without it all and spared myself the grief I'm going through now? Would I have been happier without the deep fear that grips me when I watch my husband in his bed getting weaker by the minute? Would I have missed out on the nerves that practically vibrate on top of my skin while holding his hand, knowing that I'll lose him very soon and that his warm hand won't be reaching out for me?

No. Never. I'd do it all again.

COUNTING SHEEP

Beautiful sky this evening, outside the Hospice

Sleep - as I've known it - has ceased to exist for me. It defies me, does not cooperate, leaves me bewildered and blinking with tired eyes in the middle of the night. I've always been a sound sleeper, but now not…. not any more.

My insomniac friend Grete had something to say about my new condition: Welcome to our world. This is what we're used to. But you're spoilt with the easiness of sleep, so insomnia deals you a harder blow when it suddenly appears. You fight it, you question it, you're simply disbelieving.

And she proceeded to give me a lot of good advice - having merited a PhD in insomnia as she said - and I'm trying out this advice. Trying to blank out churning thoughts - which might work to some extent. In short it means not letting your spinning mind take control, but shutting it out. I've tried breathing exercises, I've even counted sheep.

I hate you, insomnia! I hate twisting and turning for two, three, four hours, before I finally fall into an exhausted and fitful drowse at about five in the morning. I know the meaning of "fitful" now, oh yes, I do! A couple of times I've taken an Oxazepam - which I'm not used to at all! - and have woken way into the morning as a total zombie. But the oblivion has been blissful.

Or - the other version - I fall asleep over my my book, subconsciously thankful that sleep is actually happening. Then I wake abruptly, check my phone for the time (not the done thing in insomnia circles) and my heart sinks. One hour's sleep - was that all?

Spring is here, so early this year! Can I begin to believe it? Glorious days! Though never have I had a sadder spring.

Of course I know what threw this old sleepyhead off balance. Every night I listened to my husband's breathing, reaching out to make sure he was there. Shallow rest in case he wanted to get up and be accompanied to the bathroom. But then again it's not all about him. It's about MY worries, my horror of being left alone, my helplessness, my self-pity. I lie awake, almost nurturing my fears. My enormous fears about not being able to cope without my rock by my side. The nightmare of not seeing his face and his body and his whole being next to me when I wake up. All of a sudden on my own, basically.

I am now getting used to living like this. On Tuesday March 17 my husband will have been away from home for six weeks. Have my nocturnal worries subsided? No. But my worries of not taking care of him properly are gone now - fortunately.

The Hospice is of course the most incredible place to be when you finally realise that palliative care is inevitable. Again I want to shout out loud and clear that the people who work there are ANGELS. They are in possession of a special care-gene that we should all learn from.

My conversations with the nurses soothe me now. Twice last week I arrived at the Hospice and the flag was on half-mast, and once the hearse was waiting outside with its hatch open. What can I say? The reality of our situation is driven home so mercilessly. It took me a couple of days to process this. I came to the conclusion that in a way it's okay too. It gives me an eye-opener, an awakening. This is what awaits us soon. This is why my husband is in a Hospice. It's final. Death is just around the corner now.

This is what the nurses tell me when I ask them how on earth they cope with their patients dying and not least KNOWING that they'll soon die: "We are used to it. This is our job. But we cry too. We are moved every day. But we see that death is not always the worst outcome after a long and exhausting illness."

Oh yes - they soothe me.

I've spent the night in my husband's room a couple of times. There's a spare room, there's a sitting area, TV, stereo, fridge - and a kitchen down the corridor where I can make him his favourite cocktail Caipirinha. And cut fresh vegetables for him to dip in spicy sour cream. 

The strangest thing happened the night between Friday and Saturday in that spare room at the Hospice. I fell asleep quickly and I slept well. 

Out with the boys - 2010. "I've got the tab."

Always in love with that closeness to the sea here in Oslo. Lunch with sister-in-law Tone at Strand Restaurant earlier this week. 

FRESH STRAWBERRIES, PLEASE

Last week was half-term school holiday here in Oslo, and I invited my daughter Johanne and the two granddaughters on a two-day cruise to Kiel, Germany. Lucky granddaughters! For the first half of the week-long holiday they stayed with their other grandparents in Nordland, in the north of Norway, where they enjoyed themselves immensely, shopping, going to the movies, meeting relatives, eating fantastic food - and as grandmother Gudrun said: Also simply doing nothing. Which is a great clue to how to enjoy yourself with grandchildren - leave them alone every once in a while, let them (and yourself) get on with those small insignificant everyday things, whatever they may be. (I for one am such a bad, lazy and self-absorbed Granny that I may easily agree to hours of TV, internet surfing, social media contact and staying up late. "Can I please turn the light off and go to sleep now, Mimmi?")

Kiel docks in sunlight! I think this is a first - and I have been to this harbour town approximately 50 times...

Only four hours off the ship in Kiel - just enough time to have a delicious Prosecco breakfast and do a bit of shopping in the pedestrian area - then back onboard for some more tastes of luxury. It's funny how quickly you get used to that luxury feeling. And these were only two days! Imagine those loooong Caribbean cruises - day-in day-out of pure laziness! Here you can really talk about "doing nothing!" Well, come to think of it I was on a 3-week cruise myself 45 years ago - when I was 15 - and my parents nearly went bonkers with boredom, which I suppose is a good and healthy sign. But I loved it! As did my grandchildren on this very short one, and the minute we disembarked in Oslo - having been gone exactly 44 hours - granddaughter Mira wanted to re-board and do it all over again!

Ooo - that cruisin' feelin'

Massage with a view for Big Mama - Aqualand for the others...

Fresh strawberries, please

  

Dining in style...

… and not even managing to finish the ice lolly...

Well, after forty-four hours of delightful and delicious distraction it was back to reality and my roller coaster of emotions, my endless brainspin, my exhausting conflicting thoughts, my "mountain high and valley low."

On February 17 I drove my husband from Hospice Lovisenberg in Oslo straight to the Hospice in our new municipality of Bærum. We were told there was a long waiting list, but he must have been given priority. So this is where he is now, in a room the size of a small flat, with hotel standard and a terrace and a spare room (for me) and guess what?! Angels work here too. They must have a special angel-gene, these nurses and these volunteers. Never have I become so close so quickly to anyone in my whole life as I have to the wonderful human beings who work in the Hospices. And knowing they take such good care of my husband relieves me endlessly.

Yesterday my husband was supposed to go to the Radiation Hospital for a blood test because he is in the middle of his chemo cycle. In two weeks there's a new consultation with the doctor to decide on another round of chemo. In accordance with the Hospice doctor I did not take my husband for the blood test yesterday, because of the trauma of moving him, and I called the Hospital to cancel. The hospital doctor rang me right back, and in just a few minutes we agreed on this: No more cancer treatments, i.e. chemo, no more blood tests, no more brain scans.

This is it.

Spare room - thinking I'll spend the night here this weekend

My husband's room on the right. One of the common rooms on the left - you can spot my husband there, just after I left him this evening. 

Or - then again, this is not it.

He's very much here still. This afternoon I visited him accompanied by his "second wife" - Turi, the wife of one of his best mates, who has known him much longer than I have, and who has become one of my very closest friends too. I honestly don't know what I would have done without her support. We sat with him for two hours and chatted, laughed and joked - and I'll say this: My husband's inherent sense of humour tells me over and over why I've loved him so much during all these thirty-four years. It says a lot about our relationship. He has always disarmed me - this crazy impulsive woman.

I sat with him for another hour. Feeding him. Guiding his hand to the wine glass. Noting the numbers he wants for his game coupons, Eurojackpot, Keno, the horses. (He remembers them by heart). Talking about this and that. Not talking. Hugging. Stroking. Chatting with the nurses who move quietly to and fro, in no hurry. Leaving at dusk to go home to my flat to talk to Sophie and eat something.

Tomorrow our fitted curtains will arrive, finally. So tired of being paranoid of everyone seeing me dance to Bryan Ferry's "Simple Twist of Fate" and Neil Young's "Harvest Moon." Well, as if I care.

I will describe the curtains to my husband tomorrow. But I do wish he could see them!

No curtains!

My Throwback Thursday photo posted on Instagram this evening. I simply love it!

For my gambling husband

IN THE MIDST OF LIFE WE ARE IN DEATH

Today's blog title is borrowed from Joan Didion's prize-winning depiction of her personal grief - "The Year of Magical Thinking."

I have recently finished reading this book. I read about half of it just before I moved in December, then after I'd moved I couldn't find it (it was buried deep in one of the hundred banana boxes), and I missed it and was desperate to retrieve it. And then - yes, magical! All of a sudden it turned up when I stopped looking for it.

Joan Didion won the Pulitzer Prize 2005 for this book. It's simply a recount of her experience with and after the death of her husband of thirty-nine years - John Gregory Dunne. He died suddenly and unexpectedly at dinner on New Year's Eve 2003 from a heart attack. It's also about the longterm illness of her daughter, who died just as she was finishing the book. (She has written another one about this loss, "Blue Nights"). I find myself admiring her openness, her honesty and her truthfulness about grief, bereavement and mourning. And she's not even that emotional - just frank. But between the lines you realise how traumatised she is. As she herself has pointed out - she was crazy with sorrow. She says she wants others in the same situation to know that their craziness is "normal."

I recognise myself in her. Without attempting any bold comparison I see that I write a bit like her. My mission is to convey to others my situation of living day in and day out with unbearable sorrow, with the knowledge that my husband of nearly thirty-two years, my life partner, my soulmate, is going to die from his illness. Not in five years, not in ten, not in twenty - but very soon. The absurdity of it! The absurdity of knowing that "in the midst of life we are in death." Still, this is a fact, an inevitable one, and I have to deal with it, both now and when he is gone.

"Life changes in the instant. The ordinary instant." Joan Didion.

"The Year of Magical Thinking" was recommended to me by my Norwegian friend Eva, who emigrated to Australia ages ago (a bit like my own daughter has done), and I bless her for picking out and knowing exactly the kind of literature that would soothe me. Eva and go way back - to 1976 and our first encounter at the old airport of Oslo - Fornebu - which was situated just a stone's throw away from where my new flat is. Funny how coincidences simply enter your life and in retrospect they were obvious!

Brighton of course!

I was at the airport gate waiting for my flight to England where I was going to spend summer '76 with my English boyfriend. A quick visit to the Ladies' left me so scared I simply had to tell someone, and that someone was the girl next to me, waiting for the same flight. When I came out of my toilet booth there were two REALLY frightening looking guys by the wash basins (in the Ladies for heavens's sake!), and it looked to me as they were swapping, trading, whatever - something illegal - guns, drugs… well, they shouldn't have been in the Ladies' with that nonchalant attitude anyway!

My new acquaintance calmed me down - and said in as many words that she thought I might be overreacting. That's my friend Eva - she'll always be straight with you!

So we got talking - and I asked her what she was going to be doing in England over the summer holidays. "Getting married," she said, very matter-of-factly. "Then we'll be moving to Brighton and I'm starting at the University of Sussex in October." "You'll meet my friend Grete there!" I said. Long story short - the following year I enrolled at the University of Sussex, and the year after Tove turned up at the same Uni and became my friend for life. Four Norwegian girls that coincidence brought together and who are still very much in touch. (And Joan Didion's book was lent to me by Grete)!

I think it was all meant to be. The support these girls give me is endless. This is true friendship for you.

My husband has spent the last twelve days at the Hospice. My decision to ask for more help got things moving at a fast pace, and only five days after my application to Hospice Lovisenberg in Oslo he was admitted for a two-week stay. Though after moving house we now belong to another municipality, there was no question of boundaries. He was there for a five-day stay at the beginning of December when we moved, and they understood the importance of admitting him to somewhere familiar, especially important now that he has no eyesight and has lost the use of his legs.

My days have been structured differently while my husband is away from home, and I've been assembling IKEA's Billy bookshelves at such a rate that I should receive the IKEA gold medal, or at least be given the lead role in the next IKEA commercial. Finally my wardrobe interior arrived too (ordered and paid for before Christmas), and the enormous contents of clothes from black plastic bin liners are being neatly folded or hung out of sight. Much of it has in fact gone into other sacks for donating at the Salvation Army depots. And these are beautiful things! But when you realise you haven't worn them for let's say the past ten years - well, it's not likely they'll ever have a revival.

The view from my husband's room at the Hospice. So terribly sad that he can't enjoy it, but we tried to describe it to him.

I took my husband out of the Hospice last night to come home to a dinner party with six close friends and his sister Eva and our daughter Johanne and her friend Janne. It was great fun and much laughter. He managed to discern and place all the different voices. He enjoyed himself immensely. So did I.

But then, after everyone had left, and I'd put him to bed, I found myself breaking. And today has been bleak. Sleeping next to him again was lovely, but seeing that I can't possibly handle him on my own ever again was a horrible realisation. He fell off the toilet this morning, right on to the hard tiled bathroom floor. If Johanne hadn't stayed the night and been here, I would have had to call the emergency nurse. The two of us lifted him. I'd left him alone on the toilet. The nurses at the Hospice wouldn't have done that. Basically I'm not a nurse. And he needs a nurse all the time, preferably two. Again I thought I'd handle it, and I didn't.

I'm afraid he won't be coming home again. Perhaps never again. He was glad to go back to the Hospice this afternoon. It must feel a lot safer. But I am so happy we made the dinner party last night. 

At the moment I am dealing with a roller coaster of emotions and not least deep grief. But my huge relief now is having let up on responsibility and decisions. For the first time in my life I am pleased that others are taking control.

After the party

Beautiful flowers from our even more beautiful friends 

DOCTOR CLOONEY

Beautiful orchids from Irish friend Addie - my brother from another mother. My sista from another mista. I couldn't believe it when this decoration suddenly appeared at my door. Well, no. Trust her to send us flowers. 

Sometimes people ask me in disbelief why there is nothing that can be done to cure my husband's brain tumour. They are adamant there must be something - "why don't you just insist upon another operation to remove it?" "Why don't you demand that new medicine they've been researching in Sweden? I've read that others are getting it!" "Don't listen to the doctors, question them, challenge them!" This is all directed at me.

The other day I had to go through his entire illness with two of his best friends - the diagnosis confirmed to us after surgery in October 2013, the prognosis, the type of tumour. It surprised me that they hadn't caught on to it all before, but perhaps there's a sort of denial involved here.

My husband's brain tumour is called Glioblastoma, one of the most aggressively malignant cancer tumours there is. It occurs only in the brain and has not spread from any other part of the body. Medical research has not yet been able to reveal the cause. It's not hereditary, it has nothing to to with lifestyle or diet. It can hit anyone, but is most common in men between the ages of 50 and 70, less common in women. It is basically a rare disease. The average survival from the day of diagnosis - with radiation and chemotherapy treatment - is 12 to 15 months, without any treatment it is 4-5 months.

Today - February 1st - we count 15 months and 21 days since my husband's surgery.

Surgery involves removing as much of the tumour as possible and then keeping development stable with treatments, but sooner or later it will start to regrow. The doctor at the post-op meeting described it as an octopus with tentacles that wind their way into all parts of the brain. This is what has happened to my husband now. The tentacles have now attacked the visual cortex and have made him blind. The tumour, which is on the right side of the brain, pushes his brain leftwards and thereby paralyses the left side of his body - his mouth droops that way, his arm is useless, and he can't walk properly with his left leg, but drags it behind him.

This week everything took a turn for the worse. I can't believe how quickly changes appear now. Saturday a week ago we were at a friend's house for dinner, this Saturday we couldn't have made it.

The eye specialist we saw on Tuesday merely said: "There is no more functionality in your eyes. The pupil activity is gone." Then on Wednesday was the monthly appointment at the radiation hospital, to decide on a new round of chemotherapy. The doctor said: "No more chemo. It's useless and might do more harm than good at this point."

I made a praying gesture behind my husband's back - PLEASE. I saw my husband's disappointment, and he said: "What will I set my hopes on now?" Hope is important - until the very last. Even if it's mixed with an element of denial.

So the tall dark handsome doctor - who looks like he comes straight out of a hospital TV series - said: "Ok. Another round of chemo it is."

At the end of the session with Dr Clooney and the lovely nurse Julia I mentioned that my daughters had been on to me about getting some help. Another stay in a Hospice, home carers and nurses. I have refused up until now - perceived it as a bit of an interference really. How can they manage better than me?

Oh wow. My remark started a landslide.

The doctor said to me: "You are unique. I have never seen anything like it. You do the work of a team of nurses." To my husband he said: "Your wife is one in a million. Anyone else would have sent you to a home, or a hospice, or had nurses in - a long time ago. And your family! Those daughters of yours. You must have done something right!"

I bet Dr Clooney says that to all the girls.

We keep receiving aid stuff from the municipal office. I call this our stripper pole. My husband wonders if he's meant to put on a show, especially considering we have no curtains yet. (It's supposed to be grabbed so that he can raise himself out of bed).

Well. On arriving home I simply sat down alone - and whimpered. For a few minutes. Then I rang everyone there is to ring - Hospice, home nurses, the lot. 

End of story - the nurse has been here Friday, Saturday, today. And she's coming now, in just a few minutes. This was long overdue. 

I need to let go. I need to give up my huge sense of responsibility and control. I need to learn to receive help. 

Perhaps now my husband and I can be a couple again. Now that I don't need to be his nurse 80 per cent of my time and the nasty girlfriend the remaining 20.

Granddaughters have stayed for three days. Getting up at 6.30 and driving them to school… well, I deserve a medal for that….

Driving them to school in darkness and picking them up in almost darkness at 4.15 pm. But we're getting there - the days are longer now.  

Beautiful porcelain candle holder and old fashioned candy (also known as Dr Clooney's Remedies) for my husband, from brother Harald and sister-in-law Tone when they visited the other day